What are the Research Priorities of Adult Patients with Chronic Kidney Disease not on Dialysis, their Care Providers, Clinicians & Decision makers?
We are excited to be asking people with kidney disease, their care providers and the clinicians who look after them, as well as decision makers, to share their ideas about the research that is required to meet their needs. This website provides access to the survey for those who wish to complete it, describes our research protocol (our plan) and the membership of the Steering Committee. We plan to post the results of the study (the final list) on this site as well, in the fall of 2015.
What’s the study about?
We are asking people with kidney disease, along with care providers, clinicians and decision makers to share their ideas about the research that they think is needed to help improve the treatment and quality of life of people with chronic kidney disease (estimated kidney function <45%), who are not receiving dialysis and have not received a kidney transplant.
Why is this study important?
People with chronic kidney disease and those who care for them “live the disease”, so they should have a say about what the most important research priorities are.
The objective of this project is to identify the most important unanswered questions about the management of patients with kidney disease not yet on dialysis from the perspective of patients, caregivers, clinicians and policy-makers.
How will the study be conducted?
We will follow an approach that has been used successfully by the James Lind Alliance in the United Kingdom (http://www.lindalliance.org). Research priorities will be collected using a survey that will be completed by patients, care providers, clinicians and decision makers. The full list of priorities that is identified will be narrowed down to a “top 10” list by a group of patients, care providers, clinicians and decision makers. All questions identified, and the final list, will be published on our website and presented to researchers and organizations that fund research.
HOW TO PARTICIPATE
Please Complete the Survey!
Our protocol, which provides details about the aims, objectives and methods of the project, can be found here.
The final list of the top 10 research priorities will be available here.
If you have any questions about our study, please contact: